The benefits and barriers of ensuring patients have advance care planning

People nearing the end of life can benefit from discussing and recording their care preferences in a process known as advance care planning.

Abstract

Advance care planning helps ensure that patients’ wishes and preferences regarding their care at the end of life are known and respected by informal carers and health and social care professionals, even when they are no longer able to discuss their wishes or make decisions. Although it has a number of benefits, evidence shows that too few people are offered the opportunity to use advance care planning. This article summarises the findings of a literature review looking at the benefits of, and barriers to, advance care planning; it also reviews what steps can be taken to improve its quality and uptake.

Introduction

Advance care planning (ACP) has been shown to improve quality of life for people with life-limiting diseases and their families, but it is still not widely used. In 2012, only 5% of people responding to the British Social Attitudes survey reported having a living will or advance care plan in place (Shucksmith et al, 2012).

About half a million people die in the UK every year (Office for National Statistics, 2016), but not everyone has the opportunity to make choices about their end-of-life care or treatment ahead of their death. As a result, some people may not receive the best possible care and may experience additional problems towards the end of life. Through structured discussions between patients, their families and/or carers and the health professionals looking after them, ACP (also known as anticipatory care planning in Scotland) helps to ensure that patients’ wishes and preferences for their future care are known to all, particularly in the event that they become unable to make decisions due to their medical condition (Mullick et al, 2013).

ACP is often used by people who have a life-limiting illness and know that, towards the end of their lives, they may become unconscious or lose the mental capacity to make decisions; this can happen, for example, in progressive and degenerative illnesses such as advanced cancer, dementia or heart failure. ACP allows them to share their wishes with their informal and professional carers, who then know what they want and can plan care accordingly. It involves several steps, notably:

Opening the discussion;

Exploring the person’s wishes and preferences;

Identifying, recording and communicating the person’s wishes and preferences.

Documenting people’s wishes

A variety of documents can be used to record people’s end-of-life care wishes and preferences, such as a ‘preferred priorities for care’ document, an advance care plan or, in Scotland, an anticipatory care plan.

In England, Wales and Scotland, adults can create a power of attorney for their health and welfare. This is a legal document through which they allow someone else to make decisions about their health and welfare on their behalf. It is also possible to create a power of attorney for property and financial affairs.

People can also write or complete an advance decision to refuse treatment (ADRT), which in Scotland is known as an advance directive. This is a written statement of their wish to refuse specific treatments in specific situations. It allows them to make sure everyone knows what treatment they do not want in case they become unable to express their wishes – for example, if they do not want to be given antibiotics for an infection and/or to be resuscitated if their heart stops and they only have a short time to live.

In its broader context, ACP can also prompt people to make a will, plan their funeral and/or consider organ and tissue donation.

Growing awareness

In recent years, a number of strategy documents that highlight the importance of ACP have been published in the UK including, in England, the End of Life Care Strategy (Department of Health, 2008) and What’s Important to Me – A Review of Choice in End of Life Care (DH, 2015). The latter supports the recommendation that, by 2020, everyone who is affected by a terminal illness is offered a choice about where and how they will be cared for. These and other country-specific documents have led to health professionals becoming more aware of ACP.

However, further improvements are needed before ACP is fully integrated into mainstream practice. Currently, a minority of people use it. According to the British Social Attitudes survey, in 2012, only 5% of people reported having a living will or ACP in place (Shucksmith et al, 2012). Another survey found that only 6% of people had written down their wishes and preferences for their future care, should they be unable to make decisions for themselves (ComRes, 2014).

A mutual insurer has estimated that about 70% of bereaved spouses are not prepared for the death of their partner (Royal London, 2016). Exploring ACP in the literature gives us useful insights into what can be done to improve its integration into mainstream practice.

Literature review

We conducted a literature review using Web of Science and Google Scholar databases to search for “advance care planning” and other close variations, such as “advance care plan”. Articles from 2010 onwards were included in this analysis. The country of origin was not limited although most research analysed was from the US and the UK.

Eighty-one studies were reviewed. All had been published in the last six years. Over one-third (35%) had been published in 2015. Around half of all studies (48%) were published by academics and health professionals in the UK, and 52% had been published in other European countries, the US and Asia.

Thematic analysis allowed us to determine four themes, which are explored below: benefits of ACP, barriers to its use, factors that can improve its uptake, and factors that can enhance its quality. The findings show that there are concrete steps that can be taken to develop and improve ACP. Findings from the studies conducted outside the UK show that there are common trends and issues in ACP regardless of location.

Benefits of ACP

Many papers included in our literature review highlight benefits of ACP for individuals, their families and carers, and health and social care professionals. ACP ensures care is individualised by putting patients’ wishes about what care and treatment they want to receive, as well as when and how, at the centre (Hickman et al, 2015). It allows professionals to have structured discussions with patients and service users about their wishes regarding treatment preferences, goals and preferred place of care, all of which need to be part of the conversation (Kite, 2010). It also increases the use of palliative care by shifting the goal of care from curative to palliative, thus allowing all those involved to focus on managing symptoms and improving quality of life (Brinkman-Stoppelenburg et al, 2014).

According to Khan et al (2014), ACP helps individuals with life-limiting illnesses to die in the place of their choice. Many people would prefer to die at home: ACP gives them the opportunity to say so, which increases the likelihood of it happening. For this reason, Houben et al (2014) suggest that ACP reduces the number and/or length of hospital admissions, whether for life-sustaining treatment or for end-of-life care. It allows health professionals and carers to make arrangements so people nearing the end of life can spend more time at home, in a care home or in a hospice, rather than being in hospital (Khan et al, 2014; Abel et al, 2013).

ACP can improve end-of-life care for people with dementia or other neuro-degenerative diseases: discussing care preferences early in the disease trajectory gives them the opportunity to plan their care before their cognitive function deteriorates and they lose capacity to express their wishes and make decisions (Ampe et al, 2015). It can also improve the bereavement experience of families: Detering et al (2010) have shown that families of people who had completed ACP before death experienced less stress, anxiety and depression after their relative’s death. Bereaved spouses will be better prepared if they can make appropriate legal and financial arrangements before their partner’s death (Royal London, 2016).

Barriers to ACP

The literature also makes it clear that there are still many barriers to ACP, making it less effective or preventing it from happening altogether. A major barrier is the difficulties around initiating discussions: health professionals may not want to take responsibility for starting the conversation because there is no agreement on who is supposed to do this (Lotz et al, 2014). Meanwhile, patients do not always understand what ACP is and how it can benefit them; they may view it as a ‘paternalistic’ process initiated and led by healthcare staff (Almack et al, 2012). Patients who open discussions are more likely to do so if they are concerned about the burden caused by their illness and their families’ practical needs (Horne et al, 2012; Levi et al, 2010). As for families, they may create barriers simply by not sharing their relative’s end-of-life care preferences with the professionals involved (Noyes et al, 2013). Planning and thinking about death is considered morbid by some patients and makes them fearful of doing this; family or friends may not want to discuss dying to avoid upsetting a person who can no longer be cured (Horne et al, 2012).

Another barrier is poor timing. If the ACP process is launched too late in the disease trajectory, it is less likely to be effective, whereas starting it early helps people get the most out of it; for example, if ACP is not discussed until death is imminent, it is too late for the person to plan ahead and preserve their autonomy at the end of life (Pollock and Wilson, 2015). Patients who do not understand, or have not been told, their death is approaching are less likely to see why ACP is relevant for them and so less likely to engage in it (Guo et al, 2010).

ACP can be made more difficult by the confusing array of documents that can be used for recording a patient’s wishes and the range of processes for sharing and accessing that information (Heyland et al, 2013). As several professionals from different teams and specialties may be involved in a patient’s care, it is important to have consistent documents that can be understood, shared – and ideally also updated – by all.

Barriers can be specific to certain conditions or patient groups. For example, people with a cognitive impairment arising from a neurodegenerative condition will not be able to plan ahead if they have already lost mental capacity (Robinson et al, 2012). People with heart conditions often experience an unsteady decline in their health, and the unpredictability of their disease trajectory makes it harder to know when ACP discussions would be appropriate (Johnson and Booth, 2010).

How to improve ACP uptake

Patients commonly have positive views about ACP discussions and often trust nurses more than any other health professionals when making end-of-life care decisions. Nurses therefore have an important role to play in improving ACP uptake (Hinderer et al, 2015); Box 1 outlines strategies to achieve this. Patients are more likely to use ACP if they understand the negative consequences and implications of treatments or interventions that they will likely receive towards the end of life (Janssen et al, 2013). For example, patients who have a terminal condition and are at risk of having a cardiac arrest can specify that they do not want to receive cardiopulmonary resuscitation if their heart stops.

Box 1. Strategies to improve ACP uptake

Use standardised processes, eg, when patients arrive at a healthcare facility with a speci c condition (such as incurable cancer), health professionals will know they are eligible for an ACP discussion.

Health professionals should gradually prepare patients and their families for the discussion; a number of approaches can be taken. For example, patients need to know about their condition and all the treatment options including the best supportive care available to them. Mentioning best/worse case scenarios with every treatment decision may also help patients understand the risks involved and encourage them to think about supportive care such as ACP (Laryionava et al, 2015).

Health professionals should follow up ACP discussions in order to reiterate its suitability to patients, as this increases the likelihood that they will make plans for their future care (Jones et al, 2011). Follow-ups help in situations when patients are still unclear about their preferences and help those who are not exactly clear about their prognosis.

Health professionals should help patients to use ACP documents to state their wishes, so that these are accurately recorded and can be shared and accessed by all (Aw et al, 2012).

How to enhance ACP quality

Better communication, appropriate skills and the use of systems facilitating ACP can all enhance its quality. Nurses as well as doctors need training so that they have the right skills to initiate and manage ACP conversations well (Seymour et al, 2010). End-of-life care staff need information about patients’ conditions so that they are aware of patients’ needs and know when to start the ACP process (Handley et al, 2014). While cancer patients are often still able to discuss their preferences in the palliative stage, people with Parkinson’s disease, for example, may not be because of the deterioration in their cognition and physical condition; timing is therefore crucial (Richfield et al, 2013).

Discussing ACP with the right health professionals at the right time can improve both its quality and its effectiveness; for example, informing cancer patients of their prognosis and offering them ACP before first-line chemotherapy will help them understand how ACP can help and why it is useful to start it early (Tokito et al, 2015).

Discussion

This literature review has identified a number of reasons why ACP is useful for people approaching the end of life. It enables individuals to fulfil their end-of-life wishes by allowing them to receive the treatment and care they want in the place of their choice, leave instructions for carers and make practical arrangements. However, a number of barriers are preventing ACP from being used more widely and more adequately. Health professionals can overcome some of these barriers by:

Taking steps to inform and empower patients;

Putting better systems in place;

Taking responsibility for initiating discussions;

Ensuring they have the right skills.

People with life-limiting conditions are more likely to use ACP if they understand their prognosis and are well informed about ACP, its relevance and benefits. Making resources about ACP more widely available – for example, in outpatient clinics, libraries and GP surgeries – and offering them in different formats would help inform people and empower them to broach the subject, which would make ACP a less paternalistic process. Further research is needed to help us understand what else can to be done to empower people to use ACP.

Ensuring reliable systems are in place to identify suitable patients would help increase the use of ACP and prevent missed opportunities, ensuring that the right patients are offered ACP at the right time.

Health professionals should take more responsibility for initiating ACP conversations. They need to be clear about who is the best person to start the conversation, and when it should be started. This will vary from person to person, so having an individualised approach is important. Nurses are often best placed to initiate and follow through these discussions as they have a key role in the care of patients, particularly those with life-limiting illnesses.

Health professionals need to receive appropriate training – which can be a combination of formal training and online resources – so they feel confident having ACP conversations. Box 2 lists resources around planning care near the end of life.

Conclusion

Discussing ACP involves lifting the taboo around death and dying in order to help people live well until the end. In that sense it is part of a bigger societal shift, marked in recent years by several initiatives and movements (Box 3). More needs to be done for ACP to become part of mainstream practice, so people have the opportunity to plan ahead and receive better care at the end of life, even when they are no longer able to make decisions.

Box 3. Resources aiming to lift taboo around death

● compassionatecommunities.ie

● deathcafe.com

● dyingmatters.org

● endolifecareforall.com

● goodlifedeathgrief.org.uk

● phpci.info

● thinkaboutdeath.org

This literature review has identified a number of reasons why ACP is currently not being used more widely, but also a number of factors likely to increase and improve its use, and nurses have an important role to play in this. With more training and skills to initiate ACP discussions, nurses can make a real difference to people who may benefit from this specific type of care planning.

When ACP is implemented, it may also reduce pressure on hospitals by allowing some people to receive treatment and care at home when they would otherwise have been admitted to hospital. However, this also means there may be greater demand for community nurses to provide care at home if ACP uptake increases.

Key points

Advance care planning is a process of discussions between patients, families and health and social care professionals regarding patients’ wishes for the care they will receive at the end of life

ACP helps to ensure patients’ preferences for their future care are known and respected, particularly if they become unable to express their wishes or make decisions

The timing of ACP discussions is crucial, as is the training of professionals

Discussing ACP involves lifting the taboo around death and dying in order to help people live well until the end

Hickman SE et al (2015) Use of the physician orders for life-sustaining treatment program in the clinical setting: a systematic review of the literature. Journal of the American Geriatrics Society; 63: 2, 341-350.

Horne G et al (2012) Maintaining integrity in the face of death: a grounded theory to explain the perspectives of people affected by lung cancer about the expression of wishes for end of life care. International Journal of Nursing Studies; 49: 6, 718-726.

Pollock K, Wilson E (2015) Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life. Health Services and Delivery Research; 3: 31.

A large retrospective study by the National Institute for Health Research has found nationwide variation in the timing of referral to hospice care. Older people were referred closer to death than younger people

Readers' comments (2)

At each care home, the patient's Advance Decision was supplied to both the home and the GP's practice that dealt specifically with care home residents and patients in that locality.

It clearly stated that should she have any of the listed diseases in the Advance Decision then she did not want life-prolonging treatment. Dementia was listed.

The Advance Nurse Practitioner attached to the GP practice for care homes discussed end of life care with the relatives who were both supportive of the patient's wishes, but the nurse insisted that antibiotics should be given for up to 2 weeks if this patient had a secondary infection from a cold, for example.

Dementia developed, in part because funding for nursing care was not allotted by the NHS to the nursing and residential home where the patient then lived despite clear need for it and proper application for it.

Documentation which later surfaced showed that the patient officially was classified as receiving it but the home did not get it and so only District Nurse care was supplied which meant that her primary health needs went unattended. Consequently delirium repeatedly occurred and advanced the manifestation of dementia.

After a lot of the relative being fobbed off and sophisticated mismanagement and aggression by senior NHS managers, the patient eventually came to receive the Continuing Health Care funding but was moved to a home with the consent of one relative but not of the other involved relative who actively got the CHC and who was disabled and lived away.

This final home had many problems and there was more aggression to the relative when she communicated these to the CQC when she was rubbished by the NHS senior managers and the home management.

Not one of the 6 care homes owned by the firm meets the CQC standard for safety and preventing harm to its service users currently.

A DoLS Authorisation Form 12 was put in place to detain the patient there despite a pressure ulcer which had not been reported in a timely manner to the GPs and so was not seemingly treated appropriately until the active relative intervened.

The relative was subjected to more persecution. The patient was heavily sedated with an anti depressant when she reacted with physical aggression to the lack of care and inappropriate care she received, rendering her incapable of verbal communication much of the time or even being able to hold a drink or shift her sitting position.

Having signed DOLS documents and agreeing to be the patient's RPR, the active relative had tried to gain access to observe the patient when the patient was being changed for bed as there were concerns about the presence of pressure sores. Not only was this denied but the home managers, instigated by the NHS at a so-called Best Interest meeting, evicted her because she did "not trust" the home. The RPR called the police as this breached the Human Rights Act and other legislation. The police were ineffectual.

The patient died.

In the Coroner's Court the explanation that the relative requested the attendance of the police to see if there were any pressure sores was presented, somewhat scornfully.

The patient ceased to live at a point that was very convenient to the NHS senior managers. Amidst continued persecution, the active relative had put in an Application to the Court of Protection for a Deputy for Welfare because she considered that the LA and NHS were definitely not acting in the patient's best interests and were disregarding the relative's complaints because she did "not have Power of Attorney for Welfare." Of course a new home would have meant that the patient would have been subjected to an admissions examination. The woefully inadequate postmortem report did an area of pressure sores and 2 pressure sores plus a massive gallstone when the patient was on a high fat diet and had had prescribed medication for sickness.

Little attention was given at the Coroner's Court to the fact that the part of the DOLS Authorisation naming the RPR was missing from the LA records and the patient therefore was undefended by an RPR or IMCA (Independent Mental Capacity Advocate).

The GP attending court implied on oath that the antibiotics were given for repeated chest infections although this would have breached the Advance Decisiogwhich is a legally binding document and dressings suitable for pressure sores were frequently prescribed. She stated that she did not think there was any neglect at the home.

The CPN who was aware of the relative's concerns re lack of proper pressure relief for one assessed to be at high risk, omitted to check the patient's records at the home or the GP's records and seemingly did not make herself aware of the many prescriptions for wound dressings.

The psychiatrist who had done a mental capacity assessment reported that the patient did not have capacity to decide where she lived but did not qualify if this was because she was over-sedated or had not the mental capacity to decide and made no further investigations to differentiate.

The Coroner's Court failed to inform the active relative of their right to be represented by their own pathologist at postmortem until after the postmortem.

The inadequate histopathologist's report went on visual signs only, no forensics, despite the active relative, prior to death, alerting the coroners to the need for diligent enquiry if the patient were to die in that area.

So, the patient was on liquid medications and no tablet residue was evident. So no stomach contents report or toxicology report was done despite the CQC report of the home failing to ensure and record that medication was given safely with no possibility of doses of meds being given too closely together and possibly being toxic, and despite the initially unattended pressure ulcer and the pressure sores at death. Currently there are approximately 10,000 avoidable deaths each year by sepsis according to NICE.

The histopathologist recorded the "area" of pressure sores on the patient's bottom and the pressure sores on shin and foot as being "bandaged" and no infected matter visible. By definition a bandage has cloth in it, the deduction being that these sores, which were not adequately described nor measured on the Braden's Scale, were not treated appropriately with a dressing. The patient had previously been on antibiotics "for redness" on her shin but it was implied at court that antibiotics were for chest infection.

The agency nurse on duty when chestiness was reported and when the patient died went abroad and could not attend the inquest. The DOLS co-ordinator was reported to be no longer employed by the Local Authority and obscurely was excused attendance at the inquest.

One cause of death was given as bronchopneumonia. The patient had an hiatus hernia, unmedicated but reported by the relative 7 months prior to death, but was fed and then put to bed.

The Coroner's Court failed to give a finding of Prevent Future Deaths.

CONSIDER AN ALTERNATIVE SCENARIO....

Senior Managers of the NHS get regulated and checked in the same way that nurses and doctors are regulated and checked.

The appropriate funding is received by the nursing and residential home and appropriate person centred care is actually received.

The patient gets patient centred care more cheaply from the outset and does not resort to aggression.

The patient lives a reasonably satisfactory life and, not being incited to fight against poor care and thus being fuelled with a grand purpose, after a shorter and cheaper period of care dies earlier.

The relatives are not set at odds with each other or subjected to persecution, inducing further healthcare costs. They are contented that the patient has received adequate care and died reasonably.

Many care plans are written by carers or nursing staff, so not really the patients wishes.
I feel everyone, regardless of age, should have an advance directive.
So many young folk are killed on roads, murder is now very common place and although we all make to make old age, sadly so many do not make it.

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